Further Along: With Atypical Parkinsonism

By Dan R Brooks

This moving and intimate memoir reflects on Dan R. Brooks's long battle with a rare, atypical parkinsonism syndrome. It discusses the details of his condition, how it affects his daily living, the changes he has gone through, the amazing efforts his wife and caregiver make to care for him, the impact and support of his family, and the spiritual

• Language: English
• Publisher: Palmetto Publishing
• Release date: Jun 25, 2021
• ISBN: 9781638375050

Dan R Brooks

With a BA, MA, and EdD in education, Dan R. Brooks served for 31 years as an educator in public schools, including being a principal and the assistant district superintendent of human resources. He has been married for 39 years to a wonderful wife, and together they have three adult sons who are also married, and six grandchildren. Dan enjoys playing the guitar and the mandolin, and is a singer and a songwriter. His first book was I Will Go On: Living with a Movement Disorder, published in 2009.

Book preview

CHAPTER ONE

My Questions Cut Like a Knife

As I begin, I would like to comment about the medical professionals that have been so wonderful in knowledge, dedication, and service. Karrie and I have been the beneficiaries of the services of great physicians, psychologists, nurses, respiratory therapists, physical therapists, speech therapists, medical assistants, office staff and hospital support staff. We have been particularly thankful for the primary care physicians and specialists who have helped to pinpoint issues to be addressed and made referrals for needed benefits. Our neurologists, in the long view, have been the saving grace through all that we have traversed. We are grateful, and in telling the stories that follow, I want to say that these represent anomalies in our experience with the medical profession during these fifteen years of traveling the journey with an atypical parkinsonism syndrome. There are two such experiences that I want to convey because, in the chronology of things, they occurred shortly after the writing of the 2009 book we published. Hopefully, other patients who had to go through similar circumstances and the resulting confusion, anger and frustration, will be reassured that you are not alone in your experiences. With that introduction, I begin to tell the following stories of disappointment found in this first chapter.

After getting the news of a degenerative brain disease diagnosis and learning to live a life with that hanging over our heads, we began to seek experts who could further define my condition. Why was I facing such a diagnosis and how it was that I came to face all that it entailed was something I would always wrestle with, as described in I Will Go On. Now, in 2010, five years after meeting Dr. Brightman, I was still seeking some answers.

Dr. Brightman was experiencing a medical crisis of his own and was absent from his practice for most of a year. During this year I was forced to consider where I might seek medical attention and treatment for my chronic, fatal condition. I had what seemed a fortuitous moment that opened up an unusual offer that was too good to be true. In our community group, the local Parkinson's support group, a special speaker was appearing, and we were in attendance. Her title was movement disorder specialist, newly installed to head a neurology clinic at the Arid Region Medical Center within an hour's drive of our home. She had a strong background and had achieved several credentials with impressive areas of specialization, which included diagnostic abilities regarding degenerative brain syndromes and conditions.

Her presentation focused on diagnosing Parkinson's disease and the value of a brain surgery known as deep brain stimulation. This emphasis notwithstanding, at the conclusion of her presentation in early 2010, she boldly approached me. As I sat in my wheelchair, Dr. Sheila Stackhouse stated that she had heard of me as the former leader of the local Parkinson's group and knew of my diagnosis. She wanted to offer a free opportunity to evaluate my condition and explained that it was being offered to me, in particular. Dr. Stackhouse said, I see the dystonic tremor of your head, and I don’t think your diagnosis of atypical parkinsonism is accurate. Come and see me. I can help you.

I was immediately struck by this moment as both hurtful and hopeful. Hurtful because someone was declaring my four-year diagnosis null and void, helpful because she was promising real help and answers. When Karrie returned from the restroom, I spoke to her and explained how this proud Dr. Stackhouse had approached me and, without hearing my story, told me that the diagnosis I had was wrong but that she was willing to give me free medical care.

We both felt emotional about this offer and spent time talking about it. It turned out that the offer was real, and the fact that our regular neurologist, Dr. Brightman, was off on an extended medical leave meant that this opportunity could be explored without interfering with his treatment of my condition. Neurologists were becoming scarce at our clinic, so getting in to see one was at best a twice-yearly possibility. After much discussion and Karrie's investigation into how insurance factors would possibly play into this scenario—should this first free visit result in a continued treatment or diagnostic journey—we decided that we didn’t have anything to lose. We made an appointment and confirmed over the phone that this first visit would be free of charge.

The first visit to see Dr. Stackhouse was enticingly warm and informative. She explained her intention was to evaluate me without explanation from any prior history of diagnosis and that she preferred to start from my story and her anecdotal notes of this conversation. She examined me and watched my movements of limbs, eyes, and my walking gait. She sat down with us and indicated that I had either a genetic disease, ataxia, multiple system atrophy, or an unusual case of Parkinson's, which if I had it, would benefit from deep brain stimulation surgery. She ordered a number of tests and demonstrated great interest and warmth. The thoroughness of her examination was initially a great demonstration of her genuine desire to get to the bottom of my brain disease and find the answers to the question that had changed our lives so dramatically. I had no idea how much this initial behavior was actually a mirage.

Dr. Stackhouse rescheduled me for a follow-up examination. Karrie went to work, changing my insurance carrier from SCAN to Blue Cross because this group covered the medical center we would be going to in order to see Dr. Stackhouse.

One thing must be noted about Dr. Stackhouse: she was very concerned about some form of exposure or vulnerability because she made us sign a waiver. This caught my attention because of my writing and blogging and the way I lived my life as an advocate for other patients with movement disorders and other fatal neurological diseases. The waiver made us promise to never post any information about my medical case and her treatment online on the world-wide web. I didn’t have a problem signing this because I rationalized that anything I had done writing-wise that preceded this agreement was okay because it had been my choice up and until that point. I also felt that her reach was limited to my right to speak of my own experience, so any writing or interaction I would do on the internet after that moment would carefully exclude her name and the name of her organization. I was very careful to not violate that standard I set for myself. I came to realize that this safeguard would not be enough to keep her from reacting. Keep in mind, I had not initiated her examination, diagnosis, or treatment but had only gone to see her at her request.

The second appointment was as warm and friendly as the first. She asked me to come without my medication being taken that day, and we arrived fairly early in the morning without my usual tremor-fighting and body-stabilizing drug, carbidopa-levadopa (commonly known by the brand name Sinemet). She ran me through the usual battery of tests, including finger tapping, palm up/palm down patterns, rubbing my heel against my shin toward the floor on each leg, touching her finger and then reaching to point to my nose, observing my gait down the hall, walking in tandem and tapping my heel on the floor. There are several others, but these are among the group of commonly used Parkinson's disease tests. She was thinking that it would be important to establish whether I had idiopathic Parkinson's because her desire was to draw patients to the newly established movement disorder center, where she was the first neurologist hired to foster. Her aim, if this diagnosis was confirmed, would be the potential of deep brain stimulation surgery. It appeared to us she was thinking like a true scientist, and she directed us to have lunch and take the carbidopa/levodopa dose in the afternoon and rest while it would pass the blood brain barrier—then she would conduct the tests again to see how well I would respond to the medication.

After these steps, she returned to the examination room and ran the same battery of tests. She noted, as had Dr. Brightman four years earlier, that if I tried to walk in tandem (i.e., heel to toe in a straight line), I would easily fall over and have trouble even picking up a foot to place in front of the other without falling. She did the pull test from behind me, and I went back without any ability to right myself, just as I had without the medication administered.

She concluded that I was in need of physical therapy, several blood tests, and genetic testing to determine if I had a familial form of Parkinson's or ataxia, and she referred me to a neuropsychologist for a full battery of psychological tests. The doctor she referred me to—I will call her Dr. Cindy Synchronicity—seemed to be her go-to and was very reluctant to take my case, admitting that she, Didn’t have much experience examining patients with Parkinson's disease.

After a lot of persuading by Karrie, she was able to get a neuropsychological evaluation approved by the medical insurance. We went for an initial consultation and then scheduled a full Saturday testing day. It was a lot of work, with mental tests, physical tests, specific memory challenges, and an end-of-day true-and-false test that asked me a lot of strange questions that seemed designed more to find a mental disorder than to help determine which neurodegenerative disease I had.

After this information was completed, Dr. Synchronicity called to let us know she wanted to have an appointment to talk with us, indicating that she felt that there was a psychological condition that she seemed predetermined to use as an explanation for the atypical parkinsonism syndrome I presented.

We had all the blood work done, and I had none of the genetic or other disease processes that would cause the brain disorder that Dr. Brightman had diagnosed as atypical parkinsonism. He had done all of the supportive studies and had observed me for four years. The physical therapists at Arid Region Medical Center were making progress in both physical and occupational therapy. The exercises and activities were giving me a lot of help. I felt that this observable walking data could be reported to Dr. Stackhouse to assist in her complete evaluation. I suggested that the therapist give her a call and let her know the issues she saw me having with walking, the balance struggles I had exhibited for years, and my hand-eye coordination problems that they were working on—all related to the degenerative brain disease process I was living with that had taken my career from me and had affected my loved ones, who care so much.

The next time we went to see Dr. Stackhouse, she was literally like a different doctor. I, to this day, have no way of knowing what the neuropsychologist, Dr. Synchronicity, had said about me, which I felt must have been a misperception on her part, given her limited experience with an atypical parkinsonism patient. Or perhaps Dr. Stackhouse was angry with me when she found that I had a blog online and had published an autobiographical book about my challenges. The only thing I know is that she wanted to cut me loose and said, What else have you been doing that you haven’t told me?

I said, What do you mean?

She seemed to allude to my participation in support groups, my online story, and my attempt to keep on keeping on with my life, in spite of my challenges. She said, I can’t do anything for you. It is not Parkinson's disease, and I think you should see Dr. Synchronicity to work on your issues.

I was dumbfounded. Having been a patient of a distinguished neurologist who had been on medical leave simultaneously with Dr. Stackhouse's visit to our local Parkinson's support group, I knew that I had an extrapyramidal disorder due to a degenerative brain disease, and it caused the atypical parkinsonism syndrome. She was now denying this fact, assuming it was farcical and showing disdain for my suffering. Karrie was so angry that, when the doctor walked out of the door to get